My Dementia Diary

Confronting Alzheimer's Disease

Diaries

The Reader will hopefully understand the urgency of my writing diaries in order to document the process of sliding into the Alzheimer's Disease form of dementia.

Therefore, there are likely to be errors in spelling, syntax, or the clarity of the writing may suffer somewhat as things proceed. As of now this, will be the format, and I likely will just continue on this one page since I am noticing increasing difficulties with formatting this webpage, compared to the relative ease previously.

It was a stunning dream, and I rushed to awaken fully, go about feeding the animals, making and delivering Liz’s coffee, getting partially dressed, went out to the studio, only to find out some major error message came up on my laptop (never have had this sort of thing before), had to solve it, reboot, could not resist the apoplectic headlines about the fall of sentient civilization (that is, the current daily episode), finally got everything going, had a sip of coffee, and here I sit trying to fully remember what was the most important dream of my life.

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I think some all -powerful being is playing nasty games with me, but then I have always been a bit paranoid, sometimes with a reason, most often with none except what goes on in that mass of jelly in my head that some call a brain.

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So I will try; God, how I will try.

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I am taking a medication called Aracept to hopefully slow the advance of dementia (I can hear my inner voice say: “So, how’s THAT working for you?”), but I have learned to listen to that often not-so-comforting voice less and less, to my great relief, except I get caught in these lengthy “asides”, “episodes”, “observations” and often forget everything. Such is dementia, in my experience. Or possibly that is my life, and dementia is finding out what life really is. The only ability I have left – pay attention, this is the difference between life and death – is humor. You have been warned.

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I knew when I had this stunning dream that the longer I waited to write about, the stunning immediacy of the experience would be replaced with the kind of drivel you have just finished reading, and the essence might be lost.

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So, finally, on to the meat, what is left of it, so pay close attention as you will likely suggest the men in white coats pay me a visit soon. (They actually did, last night, disguised as God, whom I experience as a meandering train of thought interspersed with loud booms which immediately turn into white clouds. Nice, fluffy clouds, however. The loud booms are to get my attention, I believe.)

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As I turned on my computer (I can hardly read my own writing any more, as my thoughts are faster than my fingers), up came an error message that I have never seen since the advent of the computer age, something in computer-ese which translated said something like “you are now entering the arena of very deep shit, and turn around before it’s too late”.

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You may think I am joking, but this is exactly how it occurred to me.

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Another horrible defect I experience when I write is that unlike the rest of sentient civilization, I actually correct my writing errors as I go along, with the help of the the products of Silicon Valley, which further prevents the creation of “the secret to life” which will be revealed at some point further on in this rambling and likely incoherent effort.

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Further: I am taking Aricept, a drug (that is, medication) which has a reputation of giving rather vivid dreams to the patient, which is the understatement of all time. “Vivid” does not even begin to describe what I experienced last night.

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The dream:

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I am on a train, in a lounge car or passenger car, others are on the train (I am a model railroader with a lifelong experience with railroads and riding passenger trains, so it’s a natural metaphor for life as created by that Great Jokester in the Sky who provides my raw material). The trip is long and pleasant.

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At some point we came to a junction in the rail line, with numerous switches, turnouts, signals, other trains, people, etc., and I notice that I know some of these people, or have seen them before. I am quite comfortable, looking out the window, and want to interact with them. Parents, relatives, old friends, previous relationships, and some strangers comprise the various groups of people at this massive interchange. I do not know where the various routes go, and it does not seem important to me.

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So I catch up on old times with my friends, make new friends, all is pleasant. Some of the people are old relationships of various sorts, some make me happy, some make me a bit uncomfortable, but it is all okay.

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As I wait and look around, my discomfort increases. I want to talk some more, but cannot seem to, and I want to warn them of what might be ahead, or somehow get them to change their destination, which somehow takes on importance. It is as if I have some knowledge of what lies ahead, cannot describe it, cannot communicate. And I realize I cannot interact, I cannot move, I seem to be pinned onto the bed (not the one in my dream, but the actual bed in which I lay), I actually struggle to awake from this dream, yet I cannot. It is as if I am dead, or nearly so, with no way of reaching out. Gradually, a state of terror envelopes me, and I realize that I am, in fact, actually dead.

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Now, in my dream, being dead is not unpleasant, especially when one can experience all that is happening, but the bad part is there is no way to communicate with the others. They are doing fine, living their lives (I initially typed “lies” instead of “lives”, which was likely just a typographical error), but the inability to communicate was distressing, to say the least.

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Further, I tried “consciously” to wake up from that dream and sleep I was in, and could not. I was pinned to my bed by some unknown outside force, could not move, and could only experience. I was dead, but could experience my surroundings. The only difference was in my inability to communicate.

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As I write this, I think I have just described the best definition of Hell ever, in my experience. That is, to see life in its various forms and to not experience or interact with it. As I type this (or as It types this, as I am somewhere else), I have this overwhelming feeling of sadness and peace, simultaneously, which mirrors the feeling in the dream.

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As a Man Of Action, I of course try to warn them, tell them – I do not know what. Sound the warning, ring the bells, send out an alarm; all to no avail. I cannot reach anyone.

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I say the following as a hard-headed empirical engineer: I think that is the closest definition of death – or perhaps Hell - that I can imagine. My mind also says it is not that at all, but is “nothing.” But is was “something” because I sit here in tears streaming down my face (an unusual occurrence for me) at being unable to reach all of them. And – of course – I realize that it was “just” a dream, but at the time, there was no way to get out of the dream except to experience it, continuously, trying to get away, somewhere, and not being able to do anything but experience nothingness.

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At this point, words fail me. That experience went on forever, I could not reach anyone, they were not aware of me, and they continued on, happy as ever.

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Eventually, I came out of it, I opened my eyes, the morning light was coming through the windows, our cat Bella came over and sat on me as always .(I like to think my cat Bella comes to comfort me, but I know she is simply hungry and want me to get up and do my daily duty, as does the rest of the world.)

And for now, just in this moment, as I sit here in tears, that is quite good enough, and deeply satisfying.

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May 16, 2020

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As I launch this effort, I have no idea how it will end, how it will be received, or if it is of any use at all to others.

I have surveyed much of the literature on dementia and Alzheimer's Disease (not the same, but I will use them interchangeably), since using the term "dementia" since it is clearer in meaning and shorter in length, and even somewhat provocative.

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I embarked on this to help me maintain my sanity and writing ability as long as possible, to make it accessible to others at no cost, and to contribute something to the understanding of this disease from the standpoint of the one having the experience.

We shall see, or rather, YOU shall see, as without feedback I will not know.

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I am having major computer problems due to two things:

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a. Internet service in the prairie south of Santa Fe where we live is not akin to Silicon Valley by a long shot.

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b. I do, after all, have dementia.

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Therefore, email address for me may change, and if one doesn't work, use the other one.

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I will be generous and blame the latter. Also, typing is a chore now, and I have no idea how far down the road I will get. But it keeps me (relatively) sane, if not totally lucid.

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I will use humor as much as possible, and if it offends you, too bad. It's my website, after all.

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My experience so far is that it is progressing very rapidly, I am having increasing difficulty in seemingly simple chores, I have to redo much of what I do, I get easily frustrated, but rather than give up I'm proceeding to document the experience. The speed of the onset surprises me most of all; I thought it was a lengthy process. But then, I always did proceed quickly, and perhaps too rapidly for my own and others good.

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I decided this morning about 3 a.m. to give up my lifelong hobby of model railroading ( https://www.turquoiseline.com/ ) in order to write this, both as therapy, and to add to the body of knowledge of this terrible and frustrating disease. Doing that is one of the greatest disappointments of my life -- so far. You can thank me later.

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Let's move on while I still have my sense of humor.

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May 20, 2020

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Things are now progressing so rapidly that I fear I will not be able to say all that I want to say through my websites. I find it difficult with my short term memory loss to effectively interact with the website development software; it is changing noticeably on a daily basis.

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I think I have said all that I am capable of saying at this point. I hope you have enjoyed the three websites that as a group outline my life, with thanks and perspective and love.

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It has been one hell of a ride. I am happy, content, at peace. I never thought that possible in this body, this mind, this world. Yet: Here It Is! Or as Werner Erhard used to famously say: THIS IS IT!